Search This Blog

Friday, October 11, 2013

The Paralyzed Bride Draws My Ire

The Huffington Post published an article about a week ago by Rachelle Friedman, “Paralyzed Bride Speaks  Out: More than Equality, We Want a Cure”. See:   I have never met Friedman. Based on what I have read about her life post spinal cord injury I am decidedly unimpressed. Any article I have read by Friedman or about her life has a singular focus: the drama and supposed  tragedy or her injury (she was injured at her bachelorette party and is a C-6 quadriplegic). The photographs that accompany articles by Friedman and those about her often show her in a wedding gown. This image as well as the below is designed to prompt an emotional reaction--specifically pity. The plucky and attractive woman paralyzed and confined to a wheelchair. Cue the emotional music and send in your donation to some stem cell research center. 

Friedman has appeared on the Today Show, CNN, MSNBC, VH1 and has written about her post SCI life in the Huffington Post and some other news outlets. I do not like to comment on recently paralyzed people. It often takes years to physically and mentally adjust to paralysis. Another variable is the cure industry that dominates the sort of rehabilitation a paralyzed person receives. Many rehabilitation centers focus on the hazy idea of  cure as much on the needed skills to adapt to life post SCI.  Add in most rehabilitation stays are shockingly short  thanks to the insurance industry and the majority of newly minted crippled people are set up to fail or at the very least struggle mightily. By fail I mean end up readmitted to the hospital and subsequently shut into an institution (nursing home) or inaccessible home.  The primary reason I have refrained from commenting is that whenever I take a paralyzed person to task the inevitable comments that follow will be many and nasty. I also know I will be deemed bitter and hostile. Thus for those looking for a rosy assessment of Friedman stop reading now. For those that are interested in the social significance of paralysis I think I have something to offer that is not available anywhere but within the vibrant cyber world of disability rights blogging and disability studies. The mainstream press is not ready for a man like me. 

Friedman’s articles in the Huffington Post are fluffy and devoid of substance. She consistently focuses on a cure for spinal cord injury. Paralysis is bad and an individual tragedy. This  simplistic story line makes for catchy headlines, sells  newspapers and generates good television ratings. Friedman is an archetype that warms the souls of bipedal people who know nothing about disability--aside from the fact they too could become paralyzed. I just groan when I see a person like Friedman and the many like her the media embraces.  Come on, who does not like an old fashion tear jerking story? The narrative is dependent upon a tragic and preferably young and attractive figure, male or female. In Friedman’s case she is the beautiful young woman struck down and paralyzed mere weeks before her marriage. Hand out the tissues for the tears are sure to start flowing. What gets me is this works! It has worked for decades. People lap up this narrative like nectar of the gods. 

What does Friedman have to offer the bipedal masses? Trite observations such as: “Think about what you do have and not what you don’t have. Remember what’s really important. Well, it is what it is. Realize everything is relative. Have a sense of humor”. Friedman is asked to articulate these gems for one reason: her life is a tragedy and she is an object of pity. This, as I have said, is an old story--a story I would normally be happy to ignore. But one observation by Friedman got me. I keep thinking about just how wrong it is.  What exactly did she write that has warranted a post? Friedman wrote that she wanted others to know one can be happy and competent post SCI. This is "insight" is not enough though. Adapting to life post SCI has a down side and she speculates:

“Is it possible that showing such positivity could mask our daily hardships to the point that the urgency for a cure is diminished? Don’t get me wrong, its important society knows that we are more able than most would imagine.  But it sometimes feels like it is the only message we’re getting out. What about a desire for cure?   

And here comes the kicker, this is what sent me over the edge. 

I personally want society to know that 99 percent of us don’t feel that way. That we want a cure now and we want it now.

I could humorously note I have been suddenly thrust  into the 1% Okay, that is not a constructive sentence. A cure for SCI is a laudable goal. I have stated this repeatedly. I simply have no interest in a cure. Not a single paralyzed person I know has expressed an interest in a cure. Like the vast majority of paralyzed people I am too busy trying to be ordinary. Ordinary in the sense I live a rich and full life. I work, teach, get together with friends, write about subjects I care deeply about, love my family (and my gorgeous dog Kate), enjoy fall sunsets, cook what appeals to me... None of this is impressive. In fact it is very ordinary. But I am not ordinary. I am paralyzed. I use a wheelchair and disability based social bias exists. Bigotry based on physical difference is rampant. While no person will call me a “worthless eater” as the Nazi’s did long ago that does does not mean significant barriers have been eliminated. About 70% of people with a disability are unemployed and live at or below the poverty line. This figure has not changed significantly despite the fact 40 years of progressive legislation designed to empower people with a disability has been passed into law. Most people with a disability remain socially isolated. Most struggle to access basic health care. The fundamental inequities associated with disability are simply not part of the national discussion when it comes to health care, employment, and equal housing. We are in every conceivable way disenfranchised. 

When I read any article by Friedman I shake my head. Surely I think she will get it at some point. Well, those that don't get it are embraced by the media. Those with a disability that frame their existence as a tragedy are lauded. I, on the other hand, am dismissed as a crank--a bitter man miserable about his lot in life. I find this sad and deeply problematics. I want to be an agent for social change but mainstream America is not buying what I am selling. As a result, I feel a major disconnect between Friedman's life and mine. After I was paralyzed it did not take me long to realize that disability is primarily a social disease. Robert Murphy wrote this in 1987. I was relatively new to paralysis and Murphy blew my mind. In the Body Silent he articulated what I had been feeling for almost a decade. I was the same person I was before I was paralyzed but I sure as hell was not being treated with anything close to the respect I once thoughtlessly enjoyed. So I read Friedman and I am mystified. Does she and her type, recent post SCI that cannot envision anything beyond a medical model of disability, really individualize her paralysis? Do 99% of her peers really want a cure--a cure now god damn it?  I find it impossible not to question why, to quote Friedman, “there are so many stories of wheelchair users overcoming the odds”. Exactly what is being overcome? I learned long ago the physical aspect of paralysis required out of the box thinking. With a little thought a paralyzed person can avoid the vast majority of complications associated with SCI. Evolutionary theorists call this human adaptation and we humans have been adapting for millions of years. The so called overcoming involves needless social barriers. A point missed by far too many. 

The idea that the mainstream press focuses almost exclusively on how people overcome their disability is laughable. Such stories are indeed repeatedly trotted out in newspapers and television programs. They are all the same. Disability is a tragedy that can be overcome through hard work and effort.  This is exactly what people want to read. These stories require no thought and in fact make typical (non disabled people) feel good about their life. The thinking is as follows: in 500 words or in a three minute video clip one concludes disability is bad, I am glad I have not acquired a disability, and that single individual overcame a disability. Some may speculate if one person can overcome his or her disability so should every other person. Those that do not overcome disability are failures or simply lazy. This line of thinking is utterly devoid of substance and undermines the premise of the ADA--the gross and commonplace civil rights violations. 

There is a single point of agreement I share with Friedman. She thinks that when it comes to disability the general public is clueless. This is undoubtedly correct. But Friedman fails to ask the all important question why. Why does the general public fail to understand the “hardships” associated with disability? People see a paralyzed person and think the inability to walk is terrible. The inability to walk is the least important issue a paralyzed person must deal with. The basic physical problem is the refusal to negotiate difference and the way we paralyzed people navigate the world. People revere steps and bemoan the inclusion of ramps as ugly or worse yet the cost associated with wheelchair access in the form of elevators and wheelchair lifts. A waste of limited resources for a few individuals--I would be a wealthy man if I had a dime for every time I heard someone say this. Almost 25 years after the ADA was passed into law barriers to inclusion still exist--both physical and social. Yes, progress has been made but that change has been done begrudgingly and is not valued. Many bitterly complain the ADA is “an unfunded federal mandate”.  This statement reveals just how ignorant people are. The ADA is first and foremost civil rights legislation. It is an “onerous burden” and “unfunded mandate” because no value is placed on the inclusion of people with a disability. This is a human rights violation that gets no press. 

I am not the only person that has taken Friedman to task. Emily Ladau at Words I Wheel By wrote  “Why Curing Disability Should Not Outweigh Equality”. See: I urge people to go to this blog post and read not only this entry but the long comment thread. Another blog worth reading is That Crazy Cripple Chick. Please read "Screw A Cure, I want Equality: A Letter to Rachelle Friedman". See: Frankly, I think these posts are too kind. I think Friedman needs to do a lot more thinking and reading. At the top of her list should be the extensive literature in disability rights.


Jo Kelly said...

But that's the story the public wants to hear so she is playing right into their hands! How many words will we type, how many times does it have to be discussed! OY I get dizzy just thinking about it. I know I touched on these concepts a few times during my "days of speech work" and the audience was far from receptive. It was like they were saying .... ya can you please just inspire us and keep this other BS for some government official?

william Peace said...

Jo, It is the one and only story the public hears. When one deviates from inspiration and a strictly medical model of disability it is not unusual for people to get pissed off. A civil rights approach to disability is dismissed as the product of bitterness or anger thereby preventing any social change. True equality will only be won when the perception of disability in the broadest sense of the term is undergoes a radical change. Think revolutionary change.